Hi all, I apologize for my second post in as many days. Quick recap, I was dx at age 56, in February, 2016 with advanced pca. 11 of 12 cores positive, gleason score 8, bone mets to my hip and femur and pelvic nodal involvement. I have been on ADT since March, which have been very effective. My wife and I visited our chemical oncologist the end of December and were able to review our genomic testing report. We found that I have 4 mutations. Of those 4 mutations, none have reported to be responsive to any FDA approved treatment in the US. As I sit and think about this, I realize that (looking at the report) that my uro/onco received this report the beginning of November, but did not inform us that he had received it until just before our meeting (almost two months after he received the report). When we met, another person doing his fellowship met with us, almost exclusively instead of our uro/onco, and did not provide us with accurate information. We are also scheduled to have an RP next week (based on our urging). Initially, the team had mentioned that the removal would affect my quality of life and the cells would also continue to pop up somewhere else; therefore, not be effective. Now, they are willing to provide surgery.
My question is this: Does anyone out there have any recommendations for an urologist/oncologist that could act kind of as someone who would be able to provide a lite guidance, be up on clinical trials, and actually have the patients best interest in mind? I realize, as gregg57 mentions, we truly have to be our own advocates, I am sure it would help a lot of people in this forum and more if people on this board could share with us, a urologic oncologist who they have been satisfied with. It seems s disproportionate to have to fight so hard and never really get any detail from our doctor. Rather than going it alone, it would help to have a medical advocate to at least share the load? By the way, I am being treated at UCSF, live in Northern California, and would travel anywhere in the US, or farther. Thanks to all of you so much for being in this together@ Maybe I am letting the Lupron get to me today, but it seems like I really need to take control of this! Thanks again to all.
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Stickingaround1
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Awesome! Thanks a whole lot for the recommendation. Maybe the realization of having my prostate removed next week, which is a little controversial at this point, has me re-thinking/realizing that I need to make a change and up my on game a little. Thank you again!
I had mine removed as primary treatment. At the time, there was no evidence of metastasis, but the odds weren't in my favor. I also had adjuvant radiation even though the odds were 20%. As you probably know, I do have mets now. I don't regret my treatment plan, but I understand your "controversy" statement. Best wishes for a speedy recovery!
Thank you Gregg57. I have heard of De Small before and have tried to get in to see him, after I was already going there. They make it difficult to switch and then pulled the "he is not taking new patients" on me. After this last instance, I have no interest of being PC any longer. Thanks for everything!
I really like my oncologist, Dr. Eleni Efstathiou, MD, Ph, at MD Anderson in Houston. She’s top notch, specializes in PCa, and treats me as an individual and not just a ‘standard protocol’. She serves as my access to clinical trials and the latest thinking. And I use my local oncologist for blood work and any local needs I have. They work as a team - this approach has worked very well for me. My local oncologist encouraged me to get a second opinion, and when Dr. E recently recommended a new treatment for me he said, “that’s why you go to a place like MD Anderson.” Any good oncologist is not threatened by a patient wanting to get additional specialized help or a second opinion.
Hope this helps! Best of luck on your journey! You are smart to educate yourself so you can be an effective advocate!
Hi James, Thank you. She is what I am looking for. That is definitely what I am not getting now. I really appreciate it and will update you how things are going as hey progress.
Great that you're looking to move on/2nd opinion because you're not getting what you need. We got 3rd and 4th opinions too when needed. This is your LIFE. YOU will need to fight for it....but the great thing IS.....you have ALL of these AMAZING and GREAT minds to help you. We wouldn't survive without them! You will grow to love them.
A name familiar to many since he organises the excellent biannual prostate cancer meeting in LA where many of the top academic prostate oncologists, urologists and radiation oncologists come to speak.
In turn,of course it allows him to be totally networked in to the latest concepts & treatments being used by these docs
Thanks a whole lot for the recommendation and quick blip on Dr Mar Scholz. Sounds entirely exactly what I am looking for. I hope he is taking new patients. I will absolutely pursue. Thanks again!
I am also going to UCSF and share some of your concerns. Eric Small at UCSF is well known but I have a different onc.
I received a one hour phone review of my case from Dr. Turner who works with Mark Scholz MD in Marina del Rey ,California, at the Prostate Oncology Specialist Inc. He was very clear and concise. Very good feedback.
If you could contact me with the name of your onc I would appreciate it.
Mike, thanks a lot for the recommendation. I really appreciate it. That center has come up ore than once. Thanks very much again. Will you be going with Dr Turner as your primary uro/onco?
Hi Stickingaround1, I'm not certain. Doesn't seem practical having your primary onc 375 miles away. I would have to ask Turner how that would work, insurance coverage etc. Likely in today's age it's possible and have the treatments administered by a locate facility. UCSF has much of the newer testing equipment and technologies but not certain I'm getting good use of it so far.
Would still like to know the name of your onc (mike@englehome.com), if I try to jump ship to another onc certainly don't want to pick the wrong one.
I really appreciate your comments, especially the "never give in" part. I have been in this since February last year, but for the first time.....you probably know where I am going. I will give Dr Drake a shout.
Thanks very much again. I very much appreciate it!
I know it would be a long commute to see my terrific oncologist Dr. Michael Morris at Memorial Sloan Kettering Cancer Center in New York City. Here is an "OLD" video from MSKCC with Dr. Morris commenting on Hormone Therapy:
j-o-h-n, thanks a lot for the recommendation. Interesting video and he really seems to know his stuff. I will absolutely make contact and see where it goes. Thank you again.
Hi, sounds like experience at UCSF where I had Rad seeds some 15 years ago. Following that I had poor response from Uros. I located Dr. David Agus at USC Westside Prostate Cancer Center in Bev Hills and he put me on an agressive tract 6 years ago. I live in Napa Valley, if you wish to discuss call me at 707-251-9600. Be aggressive with this beast and be positive!!
I was #4 Gleason 4+5 not a candidate for surgery due PC being blown out to urethra, bladder ,2lymph nodesin pelvis. Still have my prostate.Told that it when from gigantic down to minuscule. Grew up in Bay Area.. Many top drs.. You’re going to do the best thing and get on top of this beast.. Then we just hang on for the ride. Keep getting informed...
I recommend Dr Parhiminder Singh , prostate cancer specialist at Mayo in Scottsdale. Much of my success is to his credit in making the right moves for me.. Thanks!
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The roller coaster ride with its twists and turns continues...
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